Feeling awful for 7 months and doctors don’t know what’s wrong

Posted by amroberts @amroberts, May 13 11:24pm

Hello, my name is Amber. I am a 21 year old female. I do not smoke, have never done drugs, and only drink a very little bit very occasionally. ( Yes, I know you think I’m lying, but that’s just the truth). I am no athlete, but I live on a farm and I have been pretty active throughout my life. 7 months ago, my family and I took a road trip to Nebraska (about an 8 hour trip from where I live). During that trip my symptoms started all of a sudden.

Now, every morning when I wake up (or if I wake up from a nap) I can feel my heart beating through my arms and into my fingertips. I can also feel it beating up my neck. I can always feel my heart beating in my chest. That is the only way I know how to explain it. It’s like I can feel my heart squeezing and feel blood flowing through my body. Im guessing that’s palpitations.

As soon as I am conscious, before I even open my eyes, I am dizzy. Everything moves all the time. I will also get light headed occasionally, and feel like I am going to pass out.

My chest hurts all the time. The pain is on the inside of my left breast. It started out as more like pressure, then it turned into a dull pain, and now it is a sharp pain. Sometimes it will get worse for no apparent reason. The sharp pain has been staying longer and is sometimes accompanied by a pain in my left shoulder in my back and sometimes a pain in my jaw like under my tongue.

I have troubles breathing. Not like I’ve just ran a mile but like an elephant is on my chest and I cannot get a good breath.

I feel lethargic, tired, and completely worn out ALL the time. None of these symptoms ever let up or leave. They used to come and go but not any more. They are always there. Occasionally, I will get hot flashes. I have began having confusion or maybe problems concentrating most of the time. I feel like I can’t even function properly.

On the worse days, my whole body aches and it hurts to move. My mom also says that when I have a hot flash, accompanied by worsening of all my other symptoms, that I turn very noticeably pale.

Also, I have always had troubles with my feet getting cold but now I feel like they are colder and the coldness has started to come up my legs. Sometimes my toes will go numb from the coldness. The other day, I was shaving my legs in the shower, and I was bent over for probably a minute. I didn’t realize until I stood back up that my leg had gone numb from the ends of my toes all the way to my hip. My hands have also started to swell. When I fully extend my fingers. My nail beds turn white.

I have had an extensive work up. Blood tests, MRIs, CTs, X-rays, and echocardiograms. Nothing huge has came up or been connected to my symptoms. I just wanted to post on here and see if anyone had ran across something like this before and might know what’s going on.

@amroberts Let me be the first to welcome you to connect . We cant diagnose as we arent professionals but care about everyone on here and try to help if we can as we all have a diverse amount of problems. What other kinds of Dr,s have you seen beside your PCP and Cardiologist ? From what you said you have a number of symptoms that could be any kind of problem . Im so sorry you are going through this as you are so young. Let us know about your specialist and anything else you can think of .

REPLY

Hello Amber,
Sorry about your symptoms. Have you gone to a teaching clinic/hospital?
From your symptoms, my guess is a good cardiologist is needed.
Do you have unstable blood pressure?
Did you wear a Holter monitor to record and monitor your heart? There is also a loop recorder to record heart rhythm malfunctions.
In an older person your symptoms could be a form of AFIB, at your age it’s highly unlikely.
Again, a good cardiologists and endocrinologist can hopefully get to the root of your problems.
Keep us posted. Hope you start to feel better.
Funcountess

REPLY
@lioness

@amroberts Let me be the first to welcome you to connect . We cant diagnose as we arent professionals but care about everyone on here and try to help if we can as we all have a diverse amount of problems. What other kinds of Dr,s have you seen beside your PCP and Cardiologist ? From what you said you have a number of symptoms that could be any kind of problem . Im so sorry you are going through this as you are so young. Let us know about your specialist and anything else you can think of .

Jump to this post

Okay, thank you.

I have also seen an ENT specialist (via zoom), I am scheduled to see infectious disease May 29, and I am scheduled to see another cardiologist June 26 for another opinion. (It has been difficult getting in to see other doctors and specialists during this Covid stuff.)

I had my gallbladder removed when I was 14, was later diagnosed with ehrlichiosis (a tick borne illness) when I was 16 after a 1 week hospital stay where my liver was struggling among other things (I was very sick), and I have a systolic heart murmur.

I have taken a round of antibiotics, steroids, and an anti-viral medication. My doctors have also tried medications to treat hypo or hyper thyroidism, panic attacks, depression, water pills, potassium pills, and some others just to see if anything would help my symptoms. But none of the medications helped.

REPLY
@funcountess

Hello Amber,
Sorry about your symptoms. Have you gone to a teaching clinic/hospital?
From your symptoms, my guess is a good cardiologist is needed.
Do you have unstable blood pressure?
Did you wear a Holter monitor to record and monitor your heart? There is also a loop recorder to record heart rhythm malfunctions.
In an older person your symptoms could be a form of AFIB, at your age it’s highly unlikely.
Again, a good cardiologists and endocrinologist can hopefully get to the root of your problems.
Keep us posted. Hope you start to feel better.
Funcountess

Jump to this post

Thank you.

I have not been to a teaching hospital/clinic. I have not seen an endocrinologist nor do I have a referral for one, but I will ask my primary dr about seeing one. I have wore a holter monitor, and it just picked up a systolic heart murmur that I have. I do not have unstable blood pressure. My blood pressure is good, and I have a lower heart rate ( about 65-70 bpm). My first echo showed mild pulmonary hypertension, but the first cardiologist I saw said that it was not a problem and it couldn’t cause all my symptoms. Then in my next 2 echos, the results said pulmonary pressure was not calculated due to poor envelope strength. My primary dr said the cardiologist told her this meant that everything looked good (un-noteworthy) so pulmonary pressure didn’t need to be calculated. Hopefully the next cardiologist I see will be more helpful.

REPLY
@amroberts

Okay, thank you.

I have also seen an ENT specialist (via zoom), I am scheduled to see infectious disease May 29, and I am scheduled to see another cardiologist June 26 for another opinion. (It has been difficult getting in to see other doctors and specialists during this Covid stuff.)

I had my gallbladder removed when I was 14, was later diagnosed with ehrlichiosis (a tick borne illness) when I was 16 after a 1 week hospital stay where my liver was struggling among other things (I was very sick), and I have a systolic heart murmur.

I have taken a round of antibiotics, steroids, and an anti-viral medication. My doctors have also tried medications to treat hypo or hyper thyroidism, panic attacks, depression, water pills, potassium pills, and some others just to see if anything would help my symptoms. But none of the medications helped.

Jump to this post

Your levothyroxine friend here!
One pill every day. Would that other conditions would be that easy!
I am praying that the doctors that you see will answer all your needs.

REPLY
@helenfrances

Your levothyroxine friend here!
One pill every day. Would that other conditions would be that easy!
I am praying that the doctors that you see will answer all your needs.

Jump to this post

Have you seen an endocrinologist?

REPLY
@helenfrances

Your levothyroxine friend here!
One pill every day. Would that other conditions would be that easy!
I am praying that the doctors that you see will answer all your needs.

Jump to this post

Thank you. Me too,

I was on levothyroxine for a while, and my dr had me stop taking because my symptoms did not improve.

REPLY
@helenfrances

Have you seen an endocrinologist?

Jump to this post

I have not seen an endocrinologist. Someone else mentioned that also. I will ask my primary dr about seeing one and getting a referral.

REPLY
@amroberts

Thank you. Me too,

I was on levothyroxine for a while, and my dr had me stop taking because my symptoms did not improve.

Jump to this post

Praying that you find the doctor who will help you.
Stay the course, ask questions, take notes🙏

REPLY

Hi @amroberts, it is tiring, especially when you're not well, to continue to search for answers and see multiple doctors, tests, etc. I applaud you in your perseverance and am glad that your doctors are listening to you and working with you to find answers. Someone mentioned going to a major teaching hospital and I agree. You might consider getting a second opinion at Mayo Clinic if that is a possibility for you. At Mayo Clinic, teams of multiple specialists work together to determine the diagnosis. Here is the contact information should you be interested to find out more http://mayocl.in/1mtmR63

REPLY

Thank you. I will definitely look into it.

REPLY
@amroberts

Okay, thank you.

I have also seen an ENT specialist (via zoom), I am scheduled to see infectious disease May 29, and I am scheduled to see another cardiologist June 26 for another opinion. (It has been difficult getting in to see other doctors and specialists during this Covid stuff.)

I had my gallbladder removed when I was 14, was later diagnosed with ehrlichiosis (a tick borne illness) when I was 16 after a 1 week hospital stay where my liver was struggling among other things (I was very sick), and I have a systolic heart murmur.

I have taken a round of antibiotics, steroids, and an anti-viral medication. My doctors have also tried medications to treat hypo or hyper thyroidism, panic attacks, depression, water pills, potassium pills, and some others just to see if anything would help my symptoms. But none of the medications helped.

Jump to this post

@amroberts Glad to hear about the schedule Dr.s you are going to see Let us know we care here .

REPLY
@amroberts

Okay, thank you.

I have also seen an ENT specialist (via zoom), I am scheduled to see infectious disease May 29, and I am scheduled to see another cardiologist June 26 for another opinion. (It has been difficult getting in to see other doctors and specialists during this Covid stuff.)

I had my gallbladder removed when I was 14, was later diagnosed with ehrlichiosis (a tick borne illness) when I was 16 after a 1 week hospital stay where my liver was struggling among other things (I was very sick), and I have a systolic heart murmur.

I have taken a round of antibiotics, steroids, and an anti-viral medication. My doctors have also tried medications to treat hypo or hyper thyroidism, panic attacks, depression, water pills, potassium pills, and some others just to see if anything would help my symptoms. But none of the medications helped.

Jump to this post

Hello @amroberts,

I've read with interest your post about your ongoing health problems. I'm so glad that you and your medical team are persisting in looking for answers. It can really be frustrating to have symptoms like yours and not to understand the origin, isn't it?

While I understand that it has been several years since your diagnosis of ehrlichiosis (a tick-borne disease), I found some information about this on the CDC website. https://www.cdc.gov/ehrlichiosis/treatment/index.html. It would be good to always remind the new doctors you see about having had ehrlichiosis.

You also mentioned, "the results said pulmonary pressure was not calculated due to poor envelope strength." I'm not sure what that means, but here is some information about Echocardiograms from the American Heart Association, https://www.heart.org/en/health-topics/heart-attack/diagnosing-a-heart-attack/echocardiogram-echo.

The advice that has been posted about seeking another opinion from a teaching hospital/clinic, like Mayo or a university medical center, is a very good suggestion. Do you plan on following up with that?

REPLY
@lioness

@amroberts Glad to hear about the schedule Dr.s you are going to see Let us know we care here .

Jump to this post

Okay, thank you!

Liked by lioness

REPLY
@hopeful33250

Hello @amroberts,

I've read with interest your post about your ongoing health problems. I'm so glad that you and your medical team are persisting in looking for answers. It can really be frustrating to have symptoms like yours and not to understand the origin, isn't it?

While I understand that it has been several years since your diagnosis of ehrlichiosis (a tick-borne disease), I found some information about this on the CDC website. https://www.cdc.gov/ehrlichiosis/treatment/index.html. It would be good to always remind the new doctors you see about having had ehrlichiosis.

You also mentioned, "the results said pulmonary pressure was not calculated due to poor envelope strength." I'm not sure what that means, but here is some information about Echocardiograms from the American Heart Association, https://www.heart.org/en/health-topics/heart-attack/diagnosing-a-heart-attack/echocardiogram-echo.

The advice that has been posted about seeking another opinion from a teaching hospital/clinic, like Mayo or a university medical center, is a very good suggestion. Do you plan on following up with that?

Jump to this post

Thank you for the information. I have done some research, but I have not been on the websites you posted.

I have asked my primary dr about getting a referral to the Mayo Clinic or something like that. She thinks that I should talk to an infectious disease dr and get a second cardiologist opinion first. It’s just a little frustrating because it is taking so long to get in to see these other doctors. But I called the infectious disease dr and the cardiologist today to see if I could get my appointments moved up. I did get one moved up, and they are working on the other. So i will be asking my primary doctor about the Mayo Clinic or a teaching hospital after these specialist appointments in the next couple weeks.

REPLY
Please login or register to post a reply.